This morning we were both awake before our alarms went off. I had gotten up at midnight to feed Liam and then woke him up to feed him again at 5 knowing that after 5:30 am he couldn’t eat again because of his CT scan. And although we were both exhausted we couldn’t sleep anymore. It was time to get this show on the road. We let Liam sleep as long as we could and put him in the stroller pjs and all and headed for the hospital.
We arrived just after 8 am and got checked in. Shortly after we were taken back to the procedure room where they drew a bunch of labs and checked his Picc line. Then we met with the surgical nurse practitioner who explained several things that we should expect with surgery. I have a love/hate relationship with people who explain things straight forward and like it is. She did just that. She explained that after surgery Liam would be swollen and probably not look much like himself. She explained he would likely receive blood products, have extra IV lines put in, have several drains at the surgical site, and that surgery would be about 8 hours. It wouldn’t have mattered how prepared we were for this it was a blow to the confidence and peace I had going into this day.
The CT/anesthesia was running late so we were able to get his scan done by 12:30pm. They said it would be about 30 minutes and to wait upstairs in the waiting room. As we returned to the waiting area my mind went to the worst possible cases when the 30 minutes came and went and we still had heard nothing. I went back and asked the nurse if she had heard anything. She was nice and called back and of course he was there just sleeping off his sedation. I totally broke down into tears. All of the anxiety and anticipation for the day was catching up to me. Shortly after they called to have us come because he was waking up. As we got to the recovery bay there he was sitting at the nurses desk playing with their phone. Happy as can be.
After we left recovery we were admitted for bowel prep in anticipation of surgery. Dr. Basu and Dr. Gerstle came to talk to us about the CT results, labs, and what to expect. Again they were very honest and up front. On the CT scan it once again showed that the tumor was shrinking. After going over the surgery in detail and answering all our questions they left. Now we had to get Liam to drink 18 oz of miralax mixed with apple juice….no small task. As Matt and I sat there we felt discouraged and unsure about our night and the next day. At this point I had been so emotional that I couldn’t even send our families an update without breaking into tears. Matt and I decided I would go back to the Ronald. I needed to shower, pack our suitcase for the night, get some dinner, and really just clear my head. As I walked back in the rain the tears continued and I just let them. Trying to process what I was feeling.
I hadn’t been back long when my phone rang, it was Matt. He said we had some visitors. I was confused then he continued to say the Dr. Basu, Dr. Gerstle, and Julie(the surgical NP) wanted to discuss Liam’s surgery for the next morning. After we had spoken the last time they had gotten together(impromptu meeting). From this meeting they had decided that because Liam’s tumor had shrunk another 29% now totally 90% shrinkage in 3 rounds of chemo they were now thinking that a watch and see approach was better than the risks involved with doing surgery. They went on to explain several things and they all made sense but at the same time it seemed so surreal. The surgeon said several times that this rarely happens but that they are happy when it does. They talked to us about the statistics and how there was only a 10% chance it would come back. They teased about coming to New York for only a CT scan and labs. Matt asked them what they would do if it were one of their children and they said together that they would both watch and wait. Dr. Basu apologized for having us come all this way for just some tests but it was what they felt like was in Liam’s best interest. How can you fault a Dr. for that? I don’t think you can. Dr. Basu said something that really stuck with me. She said that she knew we had come to them for an honest 2nd opinion and they wanted to maintain that trust with honest and open communication. They said they would give us some time to talk it over and to have the nurse call when we had made a decision. On my way back to the hospital I had a million thoughts...why had we come to NY? Were we making the right decision? Could this really be over? What would be best for Liam? Is this why I had been such a mess today?
Once I got to the hospital Matt and I prayed together and without even discussing it knew what we needed to do. Matt said I think all those people that fasted with us may have been part of an amazing miracle. We let the nurse know we agreed with the Dr’s recommendations and would get ready to go home. A few minutes later they took out Liam’s Picc line and just like that no more IV lines.
Once we got back to the Ronald we let Liam eat to his hearts content. He had chicken noodle soup, blueberries, and strawberries. I'm not sure what he enjoyed more that or getting to bathe without having some piece of tape and plastic on him for the first time in months. Its the simple things that really make life so great.
And although there are no guarantees the plan is now to watch and wait. They will watch him closely for the next several months and make sure the tumor doesn’t start to regrow. Then we’ll be able to go longer between scans. But won't officially be clear for at least 2 years. We are hoping that when we return to Utah we will be able to switch attendings and work with one that has proven to be willing to work with MSK in a joint effort for Liam’s best interests. I do understand we aren’t necessarily in the clear. I'm hopeful that this is the beginning of the end for this cancer journey. And just as quickly as the decision came to come to NY we are making the decision to go home. We miss our girls and can’t wait to be together as our family of six again.
No comments:
Post a Comment